notes & essays on daily life with terminal cancer

Links

General Cancer Resources (a small taste)

http://www.cancerresearch.org/ – “The Cancer Research Institute (CRI) is the world’s only nonprofit organization dedicated exclusively to harnessing the immune system’s power to conquer all cancers. This important work has led to a promising new class of cancer treatments called cancer immunotherapy. These treatments mobilize, strengthen, and sustain the immune system’s natural ability to destroy cancer cells.”

http://www.standup2cancer.org/ – “Stand Up To Cancer (SU2C) is a groundbreaking initiative created to accelerate innovative cancer research that will get new therapies to patients quickly and save lives now. SU2C is bringing together the best and the brightest researchers and encouraging collaboration instead of competition among the entire cancer community. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort.”

http://www.ncbi.nlm.nih.gov/pubmed/ – Want to understand the science that is working to extend our lives? This link brings you right to the search window. “PubMed comprises more than 22 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.”

http://seer.cancer.gov/ – “Surveillance, Epidemiology and End Results (SEER) Program, a premier source for cancer statistics in the United States. We collect information on incidence, prevalence and survival from specific geographic areas representing 28 percent of the US population and compile reports on all of these plus cancer mortality for the entire country.”

http://www.nancyslist.org/ – A comprehensive website that offers patient to patient guidance that is thoughtful. Their mission is “No one will ever go through cancer alone. We want every man, woman, teenager, and child who has to walk the walk to hold the hand of someone who has been there, someone who understands every bit of the cancer mystery, and who can hang in there when times are tough.”

Emotional Resources

http://cowgalval.com/tips-and-suggestions – these tips and suggestions for new arrivals to cancer-land is compiled by two of my favorite bloggers – Val and Deborah. The whole blog is worthy of attention when you have the time. It portrays a hard journey with elegance. It helps us understand the possibility of community. Val died May 19, 2013 at 44, five years after being diagnosed with stage iv lung cancer.

http://lorihope.com/helpmelive/ – this is a website for the book of the same name, Help Me Live: 20 Things People with Cancer Want You to Know. A great book to recommend to family and friends. Lori became a dear friend. The world lost out when her cancer recurrence resulted in her death in 2012. The book stays as valuable as ever.

http://www.hollypruettcelebrant.com/ – Nothing like a terminal illness to make you think about ways to communicate closure with your community. Holly represents a growing field of trained celebrants dedicated to work with us on rituals. She is also on the front lines of the home burial movement that allows loved ones to be hands on in final goodbyes.

Ovarian & Gynecological Cancer Resources

http://www.ovariancancer.org/ – The Ovarian Cancer National Alliance is a primary advocacy and support organization for women dealing with this form of cancer.

http://www.inspire.com/groups/ovarian-cancer-national-alliance/ – you can sign up for a summary list of ovca peer to peer discussions to arrive daily in your email inbox. Inspire runs the gamut of topics but allow you to read up on and get an array of opinions on what you are most trying to cope with at any time. You can also start your own discussion. A great international tool.

https://www.clearityfoundation.org/ – The Clearity Foundation rocks! The Clearity Foundation is a group of scientists, physicians and volunteers who feel passionately about changing the paradigm for ovarian cancer treatment in hope of providing more cures today. The founder, Dr. Laura Shawver was diagnosed with ovarian cancer in 2006 and learned first-hand that treatment options are extremely limited. For low cost to no cost molecular profiling of your tumor and way more, contact them!

http://helpkeepasisteralive.org/hkasa-blog/ – Maggie Heim runs this blog and a website of the same name. We met over our shared organizing to expose the drug shortages that leave many critically ill patients without access to the drugs that tax payer dollars had helped develop. Her website helpkeepasisteralive.com provides information to cope with ovarian cancer and other cancers, including links to other blogs, financial information, clinical trialsand community services.

http://healthinfoispower.wordpress.com/ – Libby’s H*O*P*E* is an informative ovarian cancer resource that can recommend various standard-of-care and ground-breaking treatment approaches (including geographically convenient clinical trials) to assist you and your doctor in designing a treatment plan. Paul Cacciatore, the founder, is talented and dedicated, having lost his 26-year old cousin, Elizabeth Remick, to ovarian cancer in 2008. Libby’s H*O*P*E* takes in the specific information that you supply and provides you with a detailed description of several different courses of action for you to review with your doctor’s assistance. What you might want from your medical team or patient advocate but rarely get.

http://www.bethedifferencefoundation.org/ – Our mission is to help women increase their chance of survival of ovarian cancer by raising money to fund programs for better treatment options, effective early screening, symptomatic and genetic predisposition awareness and a cure.

If you want to contact University of Pennsylvania Gyn/Onc clinical trials – Melissa Moore is the entry point. She is very versed, compassionate and accountable. 215-615-6838, Melissa.Moore@uphs.upenn.edu

Finding the best Clinical Trial for YOU!

http://www.myclinicaltrial.com/ &#8211; “The purpose of the site is to increase awareness of clinical trials and to provide the industry standard for clinical trial enrollment services.” Cure Magazine says, “Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.The service is free, and access is open to any user.”

http://clinicaltrials.gov/ and http://www.cancer.gov/clinicaltrials/search – website administered by the National Institutes of Health. It sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Navigating the site can be a challenge.

http://aquariusvscancer.com/ – this blog is run by my dearest cancer buddy, Kim. As she says “I’ve got lung cancer and I’m not very happy about it. It pretty much sucks.” She was diagnosed as stage iv at age 34. Her blog has a magically understated style on her daily life facing mortality.

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hello, i left a note about 1 week ago and in full rspect to your life and living understand that emailing back takes time. i would like to offer you a copy of:daily survival kit for serious illness by thomas l. mcdermitt alomg with a writting about him(i would like to send one to sue gaber also. thank you for your time. hope.